Would you continue b12 injections if you didn't feel they were helping?

[lunez22]

so after multiple tests (neg intrinsic, neg parietal, mri, ncs, lumbar puncture etc etc.) I still do not have any type of diagnosis for my peripheral neuropathy, the only thing that showed at one time was low b12 (low in range) and low (out of range) folic acid (am supplementing that also). I have been on 3x a week injections for 2.5 months with some improvement initially but also decline at this point

fortunately I live in a country (France) where I could continue with these thrice weekly injections but I am not sure... if it is worth it?

Thanks all in advance, this has been a great site

[Rheadster72]

Like yourself I don't have a diagnosis for a number of symptoms including peripheral neuropathy. A haematologist advised that I have a trial of B12 (GP didn't follow the guidance so gave the bear minimum). I started self injecting but started to feel much worse so have stopped pending appointment to see the haematologist again. Some say the symptoms can get worse but it is worth persisting. Many suggest ensuring all other vitamins and electrolytes are in balance. Without a diagnosis though it is difficult to know if you're doing the right thing. If I were you, I'd get the other levels checked out such as folate, B6, potassium. That said, I just felt it better to stop in my case. Sorry that's probably not much help but wanted to share my experience so that you know you're not the only one going through this. Good luck

[Foggyme Administrator]

Hi Lunez22.

The answer is yes, I think I would continue with the B12 injections, especially as you have neurological symptoms which have no other proven cause. Undertreated B12 deficiency can result in potentially irreversible neurological damage...so it worth persisting for a while longer.

Neurogical symptoms take longer to respond to treatment than some of the other symptoms assocaiated with B12 deficiency so 2.5 months of treatment is a short time for these to resolve (it can take many months for neurological repair to occur - up to two years for some, especially if the deficiency has been present and undetected/treated for some time).

Many here report that some symptoms tend to get worse before they get better, and this is especially true where neuro symptoms are concerned. Nobody knows why this is but it’s thought that it may be that the body is misinterpreting the renewed stronger signals to the nerves, which it takes the brain time to re-interpret properly.

People with absorption problems (the main cause - in various guises) of B12 deficiency often have other absorption problems too, so might be worth having ferritin levels (one marker of iron deficiency anaemia) and vitamin D levels checked, if these haven't already been checked. Deficiency or low levels in either of these can make you feel very ill indeed.

About the folic acid - just wondering what dose you are taking and if your folate levels have been checked recently. B12 and folate work together so if your folate levels are low, then the body can not utilise B12 properly. However, it's also the case that over supplementation with folic acid can cause symptoms similar to B12 deficiency- so worth getting checked again to see if the dose you take is appropriate you (and this may change, over time - some don't need to take folic acid once the original deficiency has been addressed).

About the IF antibody test - 40%-60% of those with PA test negative for IF antibodies, so testing negative dose not rule out PA.

Another quick thought - many people with B12 deficiency also have problems with hypothyroidism (Hashimoto's is quite common, especially if other autoimmune conditions are present (like PA). So getting thyroid checked would be a good idea if your symptoms don't improve. TSH, FT3, FT4 and the thyroid antibodies TPO and Tg are needed to check full thyroid status.

Also assume your doctor has rules out diabetes (common cause of peripheral neuropathy)?

Last thought - if you take a multi-vitamin or a vitamin B complex, check the dose of vitamin B6. Many 'multis' contain 300%+ of the RDA - and over supplementation with B6 can cause periphersl neuropathy (B6 is neuro-toxic if taken in excess, and not everybody needs it).

So...yes, think I'd continue with the injections and see how it goes. If you do decide to stop (or reduce the frequency) and your symptoms then get worse, this is a sure sign that you do indeed need more frequent injections.

Good luck with whatever you decided to do, post again if you need more help....and let us know how you get on.

👍

[Marymary7]

I have been injecting my brother with Methylcobalamin twice or three times a week for just over a year and there is no improvement but maybe he would be worse if I didn't. Folic acid didn't seem to agree so he has Methyfolate drops.

Good luck. Foggyme's advice gives me hope too.

😘

[lunez22]

Thank you all. I should also mention that I had a nerve conduction study which did show damage in both feet and hands, I guess why the doctor took me seriously and ordered a million other tests but now I am at a standstill... as others are as well I know.

I had my folate rechecked October 10th and they didn't give a specific number but over 20 ng/ml (range 2.9- 26.8)

I've been taking a regular drug store folate 800 mcg and solgar gentle iron daily as my ferritin was 22 ng/ml in late august (scale 10-291) so I thought that it wouldn't hurt to bring that more mid range

and yes I have been hypo since I was 11 years old and that has been adjusted as well, but I did not have the TPO and TG I am quite sure but I can probably get them

the doctor wants to give me a round of immunglobulin which feels a bit extreme but he said it wouldn't hurt me and that we can't mess around given I have nerve damage

otherwise I think I will experiment with cutting the folate, and my daily B

I will post if I find out anything that can help anyone

I did ask the doctor if he thinks I am absorbing b12 as I have seen that come up in the forum as well, he said he checked "quantity and quality" but i know I need to find out how!